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SPECIALIST BREAST NURSES:

AN EVIDENCE-BASED MODEL

FOR AUSTRALIAN PRACTICE

SPECIALIST BREAST NURSE

PROJECT TEAM

PREPARED BY THE NATIONAL BREAST CANCER CENTRE FUNDED BY THE AUSTRALIAN GOVERNMENT

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National Library of Australia Cataloguing-in-Publication data:

Specialist Breast Nurses: An evidence-based model for Australian practice ISBN 1 876319712

610.736980994

© 2000

iSource National Breast Cancer Centre PO Box 572

Kings Cross NSW 1340 phone: +61 2 9334 1700 fax: +61 2 9326 9329

email: directorate@nbcc.org.au

website for publications: http://www.nbcc.org.au/pages/info/resource/nbccpubs/nbccpubs.htm The iSource National Breast Cancer Centre is funded by the Australian Commonwealth Government

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T h e P r o j e c t T e a m

The Project Team

The Specialist Breast Nurse Project Team comprises members from four Collaborating Centres, the National Breast Cancer Centre, and three universities.

Collaborating Centres

Royal Adelaide Hospital

Ms Meg Lewis, Specialist Breast Nurse Mr Grantly Gill, Surgeon

Professor Ian Olver, Clinical Director, Royal Adelaide Cancer Support Centre

Dubbo Base Hospital

Ms Mary Marchant, Specialist Breast Nurse

Professor Alan Coates, Chief Executive Officer, Australian Cancer Society Mr Robert North, Surgeon

Inner and Eastern Health Care Network

Ms Gina Akers, Specialist Breast Nurse Ms Andrea Cannon, Specialist Breast Nurse Ms Christine Gray, Specialist Breast Nurse Ms Jeanette Liebelt, Specialist Breast Nurse Mr Michael Henderson, Surgeon

Professor Alan Rodger, Director, William Buckland Radiotherapy Centre, Alfred Hospital

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T h e P r o j e c t T e a m

Royal Perth Hospital

Ms Pat Hickey, Specialist Breast Nurse Mr Stephen Archer, Surgeon

Dr Cecily Metcalf, Chairperson, Multidisciplinary Breast Service Dr James Trotter

National Breast Cancer Centre

Ms Sue Carrick, Former Evidence Base Medicine Manager Ms Barbara Liebert, Project Coordinator

Mr Michael Parle, Behavioural Scientist Dr Celia Roberts, Senior Project Officer Professor Sally Redman, Director Ms Donna Rose, Project Officer

Research consultants

Associate Professor Judy Simpson, Statistician, Department of Public Health and Community Medicine, University of Sydney

Mr Glenn Salkeld, Health Economist, Department of Public Health and Community Medicine, University of Sydney

Ms Kate White, Clinical Research Fellow, Faculty of Nursing, Australian Catholic University

Research students

Ms Kitty Ng, MPH candidate, University of Sydney

Mr M Asaduzzaman Khan, MPH candidate, University of Sydney Ms Jillian Gallagher, MClinPsych candidate, Macquarie University

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A c k n o w l e d g m e n t s

Acknowledgments

The Specialist Breast Nurse Project Team would like to thank the following people for their contributions to this project.

Firstly, we would like to thank all the women with breast cancer who generously gave their time and energy to participate in the project.

Secondly, we acknowledge the work of all the staff at the treatment centres participating in the project. We would also like to thank the following individuals: Ms Melanie Abran, National Breast Cancer Centre

Ms Julie Bendall, Dubbo Base Hospital

Mr Andrew Benson, Assistant Director, Health Priorities Management, Department of Health and Aged Care, Australian Capital Territory

Ms Carol Bishop, Breast Cancer Support Service Coordinator, Cancer Foundation of Western Australia

Professor David Cairns, Macquarie University, New South Wales

Sr Pam Christopherson, Clinical Nurse Specialist, Dubbo Oncology Clinic

Mr Brian Conway, Director, Health Priorities Management, Department of Health and Aged Care, Australian Capital Territory

Ms Joanne Dellow, National Breast Cancer Centre

Ms Karen Finch, Consumer Representative (NT), Breast Cancer Network Australia Mr Owen Jenkins, Jenkins and Thompson Pty Limited

Dr Amanda McBride, General Practitioner, New South Wales Miss Suzanne Neil, Breast Surgeon, Victoria

Mr Steven Nerlich, Project Officer, Health Priorities Management, Department of Health and Aged Care, Australian Capital Territory

Ms Patsy Yates, President, Cancer Nurses Society of Australia, Queensland, Senior Lecturer in Cancer Nursing, Queensland University of Technology

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C o n t e n t s

Contents

Foreword xiii Executive summary xv Reccomendations xxi Chapter 1 Introduction 1

Chapter 2 Project overview 9

Chapter 3 Implementing the specialist breast nurse model 17

Chapter 4 What do specialist breast nurses do? 27

Chapter 5 How the treatment team and specialist breast

nurses view the specialist breast nurse role 35

Chapter 6 Women's perceptions of the specialist breast

nurse role 53

Chapter 7 The impact of the specialist breast nurse model on

women’s perceptions of care 65

Chapter 8 The nature and impact of the specialist breast nurses’

psychological care 81

Chapter 9 Evaluating the economic feasibilty of the specialist

breast nurse role 93

Chapter 10 Feasibility of the evidence-based specialist breast

nurse model care 111

Tables

1.1 Summary of randomised control trials involving

specialist breast nurses 5

3.1 Preparing the nurse for the SBN role 20

5.1 Perceptions of key components of the SBN role 39

5.2 Perceptions of the importance of women seeing

a SBN at designated times 47

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C o n t e n t s

Contents contd.

5.3 Perceptions of the clinical skills that SBNs

should possess 49

5.4 Perceptions of nursing level appropriate for a SBN,

by professional group 50

7.1 Women with early breast cancer in the national sample

seen by any breast nurse 70

7.2 Differences in perceptions of care according to level of contact with a breast nurse, within the National sample 70 7.3 Significant differences between the perceptions of

care of women in the national sample (NS) and

retrospective control (RC) 72

8.1 Percentage (%) of women referred to psychosocial

professionals, by treatment phase 89

9.1 Techniques of economic evaluation 97

9.2 The type and number of staff involved in the

breast clinic 102

9.3 Staffing and patient throughput data for the breast

clinic, by observation period 104

9.4 Number of new patients, by observation period 105

9.5 The proportion of patients with whom clinical staff spent more time in the absence of the SBN, and the

average additional time 105

9.6 The proportion of women referred to the SBN and

the average length of time freed up due to the referral,

by patient type 106

9.7 The average length of a SBN consultation,

by patient type 107

9.8 “Without SBN” results: the average and median

duration of a clinical consultation for new patients,

by patient type 108

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C o n t e n t s

Contents contd.

9.9 “With SBN” results: the average and median

duration of a clinical consultation for new and

former patients, by patient type 109

10.1 Summary of “steady state” SBN caseloads,

by patient type 117

Figures

2.1 Specialist breast nurse (SBN) clinical pathway 10

4.1 SBN’s time spent on activities, per day 29

7.1 Contact with breast nurses in the national sample

and retrospective control groups 73

7.2 Use of breast nurses for support 73

7.3 Clinical trials information and participation 75

7.4 Information resources offered to women 75

8.1 Detection of women’s psychological concerns by

the SBN at follow-up 1 and follow-up 2, by their

GHQ-12 scores 90

8.2 Distribution of women’s GHQ-12 scores

at 2 and 6 months 90

Appendices

Appendices1: Summary of evidence forming basis

of SBN model of care 129

Appendices 2: Collaborating Centre and site codes 131

Appendices 3: SBN qualifications and experience 132

Appendices 4: Intervention group information sheet

and consent form 133

Appendices 5: Recruitment rates of intervention group, by site 135 page

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C o n t e n t s

Contents contd.

Appendices 6: Reason for exclusion of ineligible women, by site 136 Appendices 7: Socio-demographic profile of women in the

intervention group (N=240) 137

Appendices 8: Frequency and time spent by SBNs on

non-daily basis activities 138

Appendices 9: SBN’s time spent on activities, per day 139

Appendices 10:Proportion of time spent by SBNs on clinical

activities for individual sites 140

Appendices 11:Proportion of different types of women seen

by SBNs for all sites 141

Appendices 12: Proportion of different types of women seen

by SBNs, by site 141

Appendices 13: Proportion of time spent by SBNs on clinical

activities with different patient types, by site 142

Appendices 14: SBN caseloads over time 143

Appendices 15: Proportion of women receiving each nurse-initiated

consultation at each treatment phase 144

Appendices 16: Proportion of women initiating consultations at

each treatment phase 144

Appendices 17: Frequency of patient-initiated consultations,

by treatment phase 145

Appendices 18 Average length of nurse-initiated consultations,

by treatment phase 147

Appendices 19 Average length of patient-initiated consultations,

by treatment phase 146

Appendices 20 Frequency distribution of length of women’s

relationships with SBNs 147

Appendices 21 Proportion of SBN-identified needs of women,

by treatment phase 148

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C o n t e n t s

Contents contd.

Appendices 22 Proportion of women receiving different

interventions, by treatment phase 149

Appendices 23 Number of resources given to women during

nurse-initiated consultations, by treatment phase 150 Appendices 24 Proportion of women referred to various

practitioners, by treatment phase 151

Appendices 25 Occupations of interviewees, by site 152

Appendices 26 SBN questionnaire response rate, by site 153

Appendices 27 Women’s perceptions of the SBN’s coordination

of care and its benefits 154

Appendices 28 Women’s perceptions of the SBN’s offering

of referrals 155

Appendices 29 Women’s perceptions of the SBN’s provision

of information 156

Appendices 30 Women’s perceptions of the SBN’s provision

of resources 157

Appendices 31 Women’s perceptions of the SBN’s provision

of emotional support 158

Appendices 32 Women’s perceptions of the SBN’s

communication skills 159

Appendices 33 Women’s perceptions of the SBN’s provision

of support for family and friends 159

Appendices 34 Women’s perceptions of the SBN’s provision

of information about practical support 160

Appendices 35 Women’s perceptions of the SBN’s provision

of support for religious and/or cultural needs 161 Appendices 36 Women’s satisfaction with timing of

SBN consultations 162

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C o n t e n t s

Contents contd.

Appendices 37 Women’s satisfaction with the structure of the

SBN model, at different treatment phases 163

Appendices 38 Response rates of intervention group for

telephone interview, by Collaborating Centre 164

Appendices 39 Distribution of women across intervention and retrospective control groups, by

Collaborating Centre 164

Appendices 40 Retrospective control group: reasons for

exclusion of ineligible women, by site 165

Appendices 41 Socio-demographic profile of participants of the intervention (SBN group) and the

two control groups 166

Appendices 42 Test results for comparison of socio-demographic characteristics between intervention (SBN group)

and two control groups 167

Appendices 43 Women’s perceptions of issues regarding

diagnosis and treatment decision-making 168

Appendices 44 Women’s perceptions of care received

(regarding clinical trials) 169

Appendices 45 Information resources offered by treatment

team members 170

Appendices 46 Women’s satisfaction with information received 170

Appendices 47 Types of physical treatment received 171

Appendices 48 Women’s length of stay away from

home for treatment 171

Appendices 49 Side effects experienced with different

types of treatment 172

Appendices 50 Women’s perceptions of care received

(regarding breast reconstruction and prosthesis) 173 page

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C o n t e n t s

Contents contd.

Appendices 51 Women’s perceptions of care received

(regarding follow-up plan after treatment) 174

Appendices 52 Women’s satisfaction with care received

(regarding practical assistance issues) 174

Appendices 53 Women’s satisfaction with care received

(regarding Breast Cancer Support Service) 175

Appendices 54 Women’s satisfaction with support received 176

Appendices 55 Frequency of psychosocial risk factors

reported in patient logs 177

Appendices 56 Interventions delivered by SBN for each

category of psychosocial risk 178

Appendices 57 Women’s GHQ-12 scores at 2 and 6 months

after diagnosis 179

Appendices 58 Psychological needs identified and referrals made by SBN during each treatment phase

based on 2 month GHQ-12 score 180

Appendices 59 Detection of psychological needs at the follow-up 1 consultation and those initiated

by women 181

Appendices 60 The financial cost of SBNs and caseload, by site 182

Appendices 61 Caseload questionnaires 183

Appendices 62 SBN cumulative caseloads 185

Appendices 63 SBN caseload survey: example feedback

and questions 186

Appendices 64 SBN caseload survey results, for five SBNs 187

References

References 123

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F o r e w o r d

Foreword

The diagnosis of breast cancer is usually a traumatic event in a woman’s life. She is immediately thrust into a totally foreign world-with a new language, new concepts, new surroundings and new faces. Nothing feels like it was before, and for many women the overwhelming feeling is one of aloneness.

Each woman is required to make several decisions for which she is often ill-equipped. These come at a time when she is most anxious for herself and her family and when she is still reeling from the shock of her situation. She needs to feel she has the information she requires to be fully informed about her own situation, her options and the resources and services available to her. She needs to have a medical team in place to ensure that she receives treatment and care tailored to her needs. She needs to believe that the team is concentrating on her, and not just on the cancer diagnosed within her.

In October 1998, hundreds of women came to Canberra from all States and Territories to attend the First National Breast Cancer Conference for Women. We worked to identify the most crucial strategies which would make a difference for Australian women diagnosed with breast cancer in the future. It is significant to note that the provision of specialist breast nurses was seen as the top priority. The participants recognised the specialist breast nurse as being in a unique position within the multi-disciplinary team setting to offer information, emotional and practical support when these are most needed.

Those of us who had access to a specialist breast nurse spoke passionately about the help given. A common comment was “I don’t know how I would have coped without her!”. For women undergoing several months of treatment which might include surgery, radiotherapy and chemotherapy, it is so important to have one constant link – a familiar face in an unfamiliar world – to offer continuity of care. The specialist breast nurse is also able to identify those women who may require referral to other services, including psychological and psychiatric support. The challenge now is to improve access for Australian women with breast cancer to a specialist breast nurse and to make sure that the role is based on evidence. It is also clear that in Australia the specialist breast nurse will need to perform different tasks in different locations. A specialist breast nurse working in a capital city will not work in the same way as a specialist breast nurse working with women in the

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F o r e w o r d

outback. Her role will vary according to local circumstances and to the range of needs of the women with whom she is working.

This NHMRC National Breast Cancer Centre report investigates the various tasks the specialist breast nurse may perform and the services she may provide to the woman and to her medical colleagues. It also considers the costs, issues and challenges involved in the role.

Most importantly, it provides clear evidence to support the view held by women who have experienced breast cancer: that the specialist breast care nurse is uniquely positioned to give real assistance in a myriad of ways to a woman at various stages of her breast cancer journey.

Lyn Swinburne National Coordinator

Breast Cancer Network Australia

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E x e c u t i v e s u m m a r y

Executive summary

Background

For Australian women the lifetime risk of breast cancer is one in 12. Despite advances in treatment there have been significant shortcomings in the level of supportive care available, with women with breast cancer experiencing unmet informational, practical and emotional needs. Specialist breast nurses (SBNs) were introduced in the United Kingdom to provide support for women with breast cancer, and the beneficial impact of their care has been demonstrated in

randomised control trials. The SBN role is less developed in Australia. The aim of this study was to explore the implementation, acceptability, impact and costs of a SBN model of care in diverse Australian settings.

The evidence-based SBN model of care

The SBN model of care developed in this project was based on the evidence-based recommendations of current oncology, and psychosocial clinical practice

guidelines for the care of women with breast cancer (summarised in NHMRC NBCC, 2000). In particular, the role required the SBN to assess and respond to women’s needs for information, practical assistance, emotional and psychological support, and to encourage an awareness of their cultural and spiritual beliefs. The model emphasised the role of the SBN in providing continuity of care for women with breast cancer.

The model was operationalised in the “5 in 12” clinical pathway, which:

• included five prescheduled consultations at key treatment phases-namely, diagnosis, pre-operative, post-operative, and two follow-up appointments across a 12-week period post diagnosis;

• allowed flexibility for women to make additional appointments with the SBN as needed; and

• provided a clear structure (in the form of a checklist of core areas) in which SBNs assessed a woman’s needs at each scheduled consultation.

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E x e c u t i v e s u m m a r y

The SBN Project

The project was conducted at four collaborating treatment centres, selected through a national competitive tendering process. These were selected as centres of excellence and diversity in health service delivery. The centres were Royal Adelaide Hospital, Royal Perth Hospital, Dubbo Base Hospital (a rural treatment centre in NSW) and the Inner and Eastern Heath Care Network in Melbourne (incorporating Alfred Hospital, Peter MacCallum Cancer Institute, Maroondah Hospital, and a private surgical setting).

Seven senior grade nurses were trained to deliver the evidence-based SBN model of care. The training was based upon the NHMRC’s Clinical practice guidelines for the treatment of early breast cancer and the National Breast Cancer Centre’s Psychosocial clinical practice guidelines: providing information, support and counselling for women with breast cancer. The SBNs also attended the National Breast Cancer Centre’s communication skills training program. The SBNs received regular supervision to ensure adherence to the clinical pathway. They also completed detailed research logs recording their intervention with each woman and their daily professional activities.

A total of 240 women with a new diagnosis of early breast cancer were recruited into the treatment arm of the study. They completed evaluations of their care by self-report questionnaire at two and six months after diagnosis and a

comprehensive telephone interview up to 12 months after diagnosis. The

telephone interview was also completed by 133 women treated at the Collaborating Centres prior to the study (the retrospective control) and a representative national sample of 544 women with early breast cancer who participated in a separate study (The National Consumer Survey).

Additional data were collected through observational studies, telephone interviews and face-to-face meetings with the SBNs and members of the treatment team to evaluate the economic feasibility of the model, factors affecting caseload and the acceptability of the SBN role within each treatment team.

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E x e c u t i v e s u m m a r y

Results

The clinical pathway

• The clinical pathway was successfully implemented across diverse settings. It specified core areas for intervention but retained enough flexibility to be adapted in the local conditions.

• The women in the study reported that they used the SBN for support and overwhelmingly endorsed the role. Eighty-eight percent of women believed that the SBN made a significant contribution to their care. Overall, 99% of women reported that they would recommend seeking treatment for breast cancer at a centre that provides a SBN.

• Approximately a third of the women in the study required more than 12 weeks to complete the five scheduled consultations. It may be necessary to allow for longer intervention as needs arise.

Benefits to women

Information

Compared with women in the retrospective control and the National Consumer Survey, women seeing a SBN in the study:

• received more information about aspects of breast cancer and treatment-for example, audio-tapes of consultations and hospital fact sheets;

• were more likely to be told about clinical trials and overall to participate in these trials; and

• were more likely to report having had, or considered having, reconstructive surgery (if this was appropriate).

Emotional support

• The study confirmed the high levels of psychosocial needs among women with breast cancer. At diagnosis 30% of women were found to have multiple risk factors for psychological morbidity. According to a psychological screening questionnaire (GHQ-12) completed at two

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E x e c u t i v e s u m m a r y

months after diagnosis, 35% of women experienced anxiety or depression and 25% experienced the same at six months.

• Following the “5 in 12” clinical pathway, the SBNs were able to identify women’s psychological needs and to adjust their intervention

accordingly. In the scheduled consultations, SBNs were found to have identified up to 72% of women experiencing high levels of distress. In consultations initiated by women, however, SBNs were less successful in identifying women’s distress.

• SBNs referred few women with likely anxiety and depression to specialist services, due to encountering difficulties in accessing mental health services and in encouraging women to take up the offer of referral.

• The SBNs’ emotional support role was rated positively by the majority of women. However, a notable minority reported difficulties sharing their feelings with the SBN and between 10% and 15% indicated they would have liked more emotional support.

SBN skills, training and caseload

To implement the evidence-based model of care SBNs required diverse and advanced knowledge, skills and experience, including:

• comprehensive knowledge of breast cancer and its treatments;

• ability to liaise with, and educate, treatment team members;

• skills in the provision, tailoring and clarification of information;

• good emotional support and counselling skills;

• psychological assessment skills;

• effective time management skills; and

• advanced clinical skills.

In their day logs SBNs recorded that they spent 54% of their time on clinical activities. The “5 in 12” clinical pathway meant that they accumulated a significant caseload. During the study the average number of women seen by the SBNs increased from 25 to 35 per week with the SBNs reporting significant time pressures to achieve the latter level and the accompanying project documentation. The diverse skills of SBNs were valued within the treatment centres, and SBNs needed to allocate time for teaching and attending meetings. A significant part of their time was also taken up by administrative activities.

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E x e c u t i v e s u m m a r y

Multidisciplinary team

The SBNs in this study were well received by, and integrated into, multidisciplinary teams, with only low levels of role conflict occurring. An understanding of the SBN role within the team and good communication between team members was essential for the integration of SBNs and the smooth functioning of the team. The SBN also played a key role in facilitating women’s understanding of the

multidisciplinary team.

Economic evaluation

• The financial costs of employing SBNs in this study ranged from $2635 per month for a half-time position through to $5500 for a full-time position.

• An observational study of one public breast clinic indicated that the presence of a SBN may have an impact on the duration and nature of clinical consultations with women with breast cancer. The medical and nursing staff tended to spend more time with women who have symptoms indicative of breast cancer when a SBN was present. The SBN’s presence also led to more discussion about treatment and inpatient management.

• The project highlighted potential approaches to a full economic assessment.

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R e c o m m e n d a t i o n s

Recommendations

In this demonstration project, the evidence-based specialist breast nurse (SBN) model of care has been found to be a promising development in the provision of supportive care for women with breast cancer across diverse Australian treatment settings. The following recommendations, based on the findings of the project, are made to assist treatment centres considering implementing one or more SBN positions.

SBN skills and qualifications

(Chapters 5, 9 and 10)

To function optimally in the role the SBN requires:

• postgraduate qualifications in oncology or breast cancer nursing;

• training in communication and supportive care skills; and

• a commitment to, and opportunity for, continuing education. On the basis of the skills required and responsibilities undertaken, it is also

recommended that the evidence-based SBN position is given a senior grading. The likely cost of employing a full-time SBN will be $5500 per month.

The relationship between the SBN and other

treatment team members (Chapters 3 and 5)

• The SBN should be recognised as an integral part of the multidisciplinary team.

• The SBN role should be negotiated within each team from the outset, taking into account the characteristics of the treatment centre and its other team members.

• Role overlap may occur between the SBN and other team members, but effective communication within the team can promote this overlap as strengthening the overall functioning of the team.

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R e c o m m e n d a t i o n s

Psychological support and supervision (Chapter 8)

• SBNs need effective skills in identifying and managing women with high levels of psychological distress.

• The evidence-based SBN model of care requires communication skills training, to enable the SBNs to elicit and respond to women’s feelings and psychological symptoms.

• Ongoing access to psychological supervision is recommended for effective implementation of the clinical pathway, SBNs’ skill development, and management of psychological impact on SBNs themselves.

• Reliable access to a mental health service is necessary to provide comprehensive care for women.

• More information is needed about the uptake of psychological referrals by women with breast cancer and about factors inhibiting women’s likelihood of accepting a referral.

Adapting the clinical pathway to local conditions

(Chapters 2, 3 and 4)

• The clinical pathway needs to be flexible in terms of the number and timing of sessions and the total duration of the intervention. This enables SBNs to take into account the needs and wishes of individual women, based upon their level of psychosocial risk, existing support networks and adjuvant treatment requirements.

• In some cases, women may need to be treated at more than one treatment centre. Adherence to the clinical pathway for each treatment phase enables clear documentation of women’s needs and continuity of support across treatment centres.

Caseload for a full-time SBN (Chapter 10)

• The sustainable caseload for each SBN will vary according to her experience and local conditions. However, when implementing the clinical pathway, it is important to consider that the number of women receiving active supportive care across the treatment phases will accumulate. It is essential to review caseloads to ensure that

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R e c o m m e n d a t i o n s each woman has adequate access to the SBN and that the SBN is not overburdened.

• On the basis of the “5 in 12” clinical pathway, it is recommended that the SBN’s caseload range between a total of 36 and 48 women with breast cancer. This allows for three-four newly diagnosed women to be added to the caseload each week. This caseload also enables the SBNs to maintain a full range of relevant professional activities, in keeping with their senior grading.

• It is important to note that if the intervention period is routinely extended (either by number of weeks or number of scheduled sessions) then the SBN’s caseload will increase proportionately. For example, seeing women for 16 weeks (rather than 12) would result in a SBN caseload of 48-64 in total.

Resource implications of the SBN position

(Chapter 9)

There is a need for further economic analyses to determine the longitudinal resource implications of the SBN and the role’s benefit to the women, other treatment team members, and the community.

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C h a p t e r 1 : I n t r o d u c t i o n

Chapter 1: Introduction

Breast cancer is the most commonly diagnosed cancer in Australian women, with approximately 10,000 women diagnosed each year, and remains the leading cause of death from cancer in women (Australian Institute of Health and Welfare, 1998). An Australian woman’s lifetime risk of developing breast cancer is one in twelve. Submissions to the House of Representatives Standing Committee on Community Affairs (1995) suggest that some women experience the management and

treatment of their breast cancer as fragmented and uncoordinated. Many women felt treatment was directed at their body parts, rather than towards them as people. Others reported problems accessing adequate information, and rarely receiving their required level or frequency of communication with members of their

treatment team. Women reported that diagnoses were often conveyed in an abrupt manner, and that their questions were met with resentment. Despite the high incidence of psychological morbidity in breast cancer patients (Kissane et al. 1998), practical and psychosocial counselling and support were seldom offered. The lack of a coordinated support system made access to appropriate services for women and their families difficult.

In a recent Australian survey of women diagnosed with early breast cancer (Williams et al. in review 2000) some women reported failing to receive enough information or support while undergoing treatment. Sixteen percent of women felt they required more support during diagnosis and treatment and 22% of women believed their family required more support from the treatment team. Fifteen percent of women reported that they would have preferred more information about their treatment. Specific information needs were also unmet: only 29% of women in relationships were offered resources for their partners; and 11% of women with children were offered resources for their children.

These findings are comparable with international studies assessing the needs of breast cancer patients. A review by Girgis and Foot (1995) found that six of eight studies reflected high levels of patient dissatisfaction with the amount of

information received. In another study, women reported a need for additional information about their cancer and its treatment (Foot, 1996). The type of

information sought may change during the course of treatment (Luker et al. 1996). Women who are well informed are more likely to have more favourable outcomes

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C h a p t e r 1 : I n t r o d u c t i o n

including reduced psychological morbidity (Fallowfield et al. 1990), better

psychological adjustment to diagnosis (Butow et al. 1996), strengthened self esteem (Kahane, 1993) and greater control in the decision making process

(Siminoff, 1991).

A diagnosis of breast cancer can cause significant emotional distress, with

estimates of anxiety disorders and depression in 30-45% of patients (Fallowfield et al. 1990; Kissane et al. 1998). Even in the absence of severe distress, breast cancer patients face considerable difficulties of adjustment. These include threats to integrity of body image and sense of attractiveness and femininity, sexual function disturbance (Turner et al. 1998) and awareness of a diagnosed malignancy and its continued threat to a woman's future (Ray, 1984).

The House of Representatives Standing Committee (1995) found that women with breast cancer rarely received the amount of support that they, or their families, required. Many women were unable to develop a rapport with their specialist, with doctors often unable to communicate on the patient’s wavelength. Some doctors appear to have an inadequate understanding of the emotional and psychological needs of patients or to lack adequate communication skills. Ray and colleagues (1984) and Maguire (1986) suggest that doctors are ill-prepared by their training or experience to provide emotional support.

Generalist nurses have also been found to be ill-equipped for both detecting and dealing with psychological distress in women with breast cancer (Maguire et al. 1978) and more recently, in palliative care settings (Heaven et al. 1997).Suominen et al (1995) found that breast cancer patients reported insufficient support during all phases of treatment, even though nurses felt they had provided a great deal of support. Although most nurses regard supportive care as an intrinsic component of their role, Ray and colleagues (1984) found that beyond the giving of comfort, nurses were more inclined to identify specialist nurses as the most appropriate professional to counsel breast cancer patients.

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C h a p t e r 1 : I n t r o d u c t i o n

Development of specialist breast nurses

Specialist breast nurses (SBNs) have training and expertise in the management and treatment of breast cancer patients (MacMillan Cancer Relief, 1995). Since the 1970s, SBN positions in the United Kingdom (UK) have become well established as part of good practice in the management of women with breast cancer. SBNs see women at diagnosis and during the course of treatment to provide

information, coordinate supportive care and to screen for the development of anxiety and depression (Jary and Franklin, 1996).

The SBN role has been extensively evaluated in both randomised control trials (RCTs) and descriptive studies. Table 1.1 summarises key findings from RCTs comparing SBN interventions with more routine care. The RCTs show that SBNs can enhance early recognition of social support needs and decrease psychosocial distress such as body image concerns and depression among women with breast cancer (McArdle et al. 1996; Watson et al. 1988). SBNs also increase early detection and referral for professional counselling of women with psychological morbidity (Maguire, 1980; Wilkinson et al. 1988).

In other RCTs, women with breast cancer who had the opportunity to have information clarified and reinforced by a SBN had increased levels of knowledge about treatment compared with women who did not have access to such a nurse (Clacey et al. 1988). The SBN’s role in improving communication cannot be understated, as this is of major importance for women. Women may feel less constrained by time pressures with a nurse than with a doctor, and therefore may ask more questions. Allowing ample consultation time and providing good quality information have been identified as important factors in assisting patients in the decision making process (House of Representatives Standing Committee on Community Affairs, 1995).

The SBN’s provision of continuity of care from diagnosis onwards is crucial for developing a trusting relationship with patients (Watson et al.1988). Providing ongoing support after the initial treatment phase may continue to benefit women. Palsson and Norberg (1995) found that continuous supportive nursing care which extends after the hospital stay can lead to feelings of security and an increased sense of control for women.

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Despite the demonstrated benefits of SBN positions, a specific role definition for practising breast nurses remains absent. This is reflected in the tendency of descriptive studies to focus on only one aspect of the SBN role (Poole, 1996). Although the UK Royal College of Nursing has produced standards of care (Royal College of Nursing, 1994), the extent to which the standards are indicative of SBN roles is not known (Poole, 1996). Although SBNs are seen as primarily providing support and information during the acute stages of breast cancer in the UK, many SBNs perceive they have a wider responsibility in promoting improved quality of life for all patients (Jary and Franklin, 1996).

This lack of clear definition can fractionalise and marginalise the role of SBNs (White et al. 1997) and reduce the effectiveness of the care they provide. For example, although providing psychosocial care is seen as a key component of the SBN role, due to heavy caseloads specialist nurses are often reduced to providing crisis intervention for patients with clearly defined needs (McArdale et al. 1996). Tait (1995) found that only 40% of patients had a psychological assessment recorded in their records by specialist nurses.

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Table 1.1: Summary of randomised control trials involving specialist breast nurses

Interventions trialled Results Statement/s Reference

1. Practical & physical

information; emotional support from breast nurse at diagnosis; pre & post surgery; home visit; ‘on demand’ versus 2. Standard care (At 3 months) Intervention group less depressed (p<0.05), more personal control (p<0.03), increased vigour (p<0.01) SBN can assist patients to adjust more rapidly in the year post surgery. Support from the time of diagnosis is important.

Watson et al.

1988

1. Support from breast nurse pre & post surgery; follow-up clinics versus 2. Standard care (At 12-18 months after surgery) Counselling failed to prevent morbidity, but increased recognition & referral of psychiatric morbidity. SBNs increase early recognition and referral of patients with psychological morbidity. Maguire et al. 1980, 1983

1. Support from breast nurse or

2. Support from voluntary organisations

or

3. Support from both or

4. Standard care. Duration determined by patient (At 12 months) Scores of psychological morbidity significantly lower in patients receiving support from SBNs compared with other groups. SBNs can significantly reduce psychological morbidity and psychosocial distress. McArdle et al. 1996

1. Individual counselling by ward & community nurses, monthly for 3 months versus

2. Limited counselling by specialist nurse for 1-2 months post discharge versus

3. Unlimited counselling by specialist nurses bi-monthly for 1 year

(At 3 months) Counselling did not prevent psychological morbidity, but specialist nurses better than ward /district nurses in recognition & treatment of psychiatric problems.

SBNs are better than general nurses in detecting and referring women in need of psychological counselling. Wilkinson et al. 1988

1. Counselling & education by specialist nurse in 3 x 45 minute sessions over 9 days post-operative versus

2. Same nurses gave information only in 3 x 20 minute sessions (over 9 days) (At 4 months) No difference in depression or anxiety. (At 1 week) Counselled group was less depressed, with better knowledge of treatment & post mastectomy support services. SBNs can increase a patient’s knowledge of treatment and post-mastectomy support services, and reduce the initial level of depression.

Clacey et al.

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Advocates of “patient demand” led breast nurse interventions (Thomson 1996; Jary and Franklin, 1996) may be disadvantaging their patients, as Luker et al. (1996) found that patients in need of information did not feel that this justified

initiating contact with the SBN. Furthermore, both nurses and patients have been reported to be unclear about the nurse’s role in patient education (Palsson and Norberg 1995).

Specialist breast nurses in Australia

While there is growing interest in SBNs in Australia, there has been a lag in the development of positions and quality evaluations. There are a number of nurses who practise as breast support nurses as a variable percentage of their work (Neil, 1997). In a recent national survey of women diagnosed with early breast cancer (Williams et al. in review 2000)47% of women reported no access to a SBN, and 25% saw a SBN only once. Of the 28% who had contact with a SBN on more than one occasion, only 14% received contact from diagnosis through to the post-operative period.

There is a considerable range in the knowledge and skills of practising SBNs, and no agreed standard of practice. In some cases, the SBN is a volunteer, while others have substantial ward duties other than the provision of information and

supportive care (Webb and Koch, 1997).

In an attempt to define the current role of SBNs in Australia better, White and colleagues (1997) surveyed 16 SBNs who spent more than 70% of their work time caring for patients with breast disease. The SBNs were asked to identify and rank descriptors of their role. Consistent with international findings, SBNs perceived their role as primarily providing psychosocial support for patients with breast cancer, although some perceived the role to include all breast diseases. Unlike the UK model, however, only 56% of SBNs surveyed attributed

importance to coordinating continuity of care for women with breast cancer. In addition, all the nurses perceived themselves as caregivers in relation to the physical needs of women with breast cancer, although the extent of this clinical role was highly variable.

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C h a p t e r 1 : I n t r o d u c t i o n Although the variability of SBNs’ roles in Australia reflects the diversity of treatment and health care settings available, the common core components of the SBN role for Australian practice have not been explicitly defined. There is growing evidence that practice standardisation through the implementation of clinical guidelines decreases care fragmentation and promotes best practice standards (Grady and Wojner, 1996).

The SBN demonstration project therefore sought to:

• use evidence from previous research to constitute a SBN model of care;

• propose a protocol for observing the activities undertaken by SBNs;

• evaluate the feasibility of the model for Australian practice; and

• identify which factors need to be addressed to translate the model into routine Australian clinical practice.

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Chapter 2: Project overview

Aims of the project

The benefit of specialist breast nurses (SBNs) in improving many aspects of supportive care has been demonstrated in randomised control trials. Despite this evidence, SBN positions remain relatively rare in Australia. This project, then, does not duplicate existing work by exploring whether SBNs could be effective under trial conditions, but rather explores the operation of these positions in Australia. The project was designed to collect information that might help hospitals

considering establishing SBN positions to consider their likely benefits and costs, and the most appropriate approaches to establishing and resourcing them. The aims of the SBN demonstration project are to explore:

1 the tasks undertaken by SBNs and their requisite skills and expertise; 2 the acceptability of the SBN role within a multidisciplinary team; 3 the acceptability of the SBN to women with breast cancer;

4 SBNs’ impact on information and support provision to women with breast cancer in Australia; and

5 the resource implications of SBN positions.

Specialist breast nurse protocol

A SBN model of care, which translated research findings and recommendations into a clinical pathway of intervention, was developed (Figure 2.1). The

intervention was based on:

NHMRC Clinical practice guidelines for the management of early breast cancer (1995);

NHMRC National Breast Cancer Centre’s (NBCC’s) draft Clinical practice guidelines for the management of advanced breast cancer (1998);

NHMRC National Breast Cancer Centre’s (NBCC’s) Psychosocial clinical practice guidelines for providing information, support and counselling to women with breast cancer (NHMRC NBCC, 2000); and

• practical advice from the breast nurses participating in the project (see Appendix 1 for summary of evidence).

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The intervention was divided into five predetermined consultations linked with key treatment phases. The clinical pathway provided a checklist that the SBN would refer to while assessing a woman’s individual needs. The intervention was tailored to meet those needs. Women were also able to initiate additional contact with the SBN at any time.

Project design

Four treatment centres were selected to participate in the project following a competitive bidding process. The treatment centres, referred to as the Collaborating Centres, are spread across Australia and represent a variety of treatment settings-including rural/urban and private/public health care settings.

Collaborating Centres

Although the chosen centres represent diverse service delivery, each met the following criteria:

• an evidence-based, multidisciplinary and consumer-oriented approach to the management of breast cancer;

• commitment to delivering care in accord with the NHMRCClinical practice guidelines for the management of early breast cancer (1995), which includes ensuring that women are informed and actively participate in treatment decisions;

• recognition as peer leaders in breast cancer management; and

• evidence of networks with regional/rural centres for the provision of breast cancer services.

The Collaborating Centres were:

• Dubbo Base Hospital, New South Wales (NSW) – a rural hospital with a bed capacity of 170, which functions as the referral centre for the Macquarie, Castlereagh and Orana Area Health Services of NSW. The service area hosts a population of 115,000 and covers a land area of almost 200,000 square kilometres.

• Inner and Eastern Health Care Network, Victoria provides services to the inner and eastern areas of Melbourne, and services approximately 1.2 million people. Participating hospitals within the network were the Alfred Hospital, Maroondah Hospital and the Peter MacCallum Cancer

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Institute. In addition, a surgeon with visiting rights to Mitcham and Ringwood Private Hospitals also participated in the project.

• The Royal Adelaide Hospital, South Australia (SA) – encompasses a comprehensive cancer centre which provides the only public hospital radiation oncology facility for SA (1.4 million people), as well as serving the Northern Territory and Broken Hill. Women with breast cancer are seen in a purpose-built women's health centre.

• The Royal Perth Hospital, Western Australia – one of three breast assessment centres servicing the entire State, extending its support to most regional areas including the remote north-west.

Appendix 2 supplies codes used for each Collaborating Centre in this report.

Participating specialist breast nurses

Seven nurses were trained to implement the SBN model of care. Four of the six public hospitals involved in the project employed a SBN on a full-time basis. One hospital employed two part-time SBNs (job-sharing), although one of the nurses had a more predominant role (34 hours per week), while the other nurse mainly provided backup support during busy clinic days as part of the project. The remaining public hospital employed a SBN on a part-time basis, reflecting the smaller numbers of women presenting to that centre. Finally, a SBN was employed on a part-time basis by a surgeon to provide care to patients both in his rooms and the private sector.

All the nurses had previous clinical experience in oncology and had held senior nursing positions (Appendix 3). Two nurses were already established in breast nurse positions at their centres, while the remainder were newly appointed.

Participating women with breast cancer

Ethical approval was obtained from each Collaborating Centre’s ethics committee.

Eligibility

Women were considered eligible to participate in the demonstration project if:

• they had a new diagnosis of early or locally advanced breast cancer or a new diagnosis of a local recurrence of breast cancer;

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• they spoke and understood English sufficiently to complete the evaluation questionnaires.

Recruitment procedure

Eligible women who presented at any of the Collaborating Centres between March and September 1998 were invited to participate. They were given an information sheet explaining the SBN intervention and the evaluation procedures to be undertaken, and asked to sign a consent form (Appendix 4).

Both the information sheet and consent form assured women of the anonymity of their responses. Evaluation questionnaires sent to the women were clearly

identifiable as correspondence from the NBCC, as were the reply-paid envelopes, thus emphasising that women’s responses could in no way compromise their relationship with any member of their treatment team. Treatment team members were blind to individuals’ responses.

Consenting women were given the option of having their consultations audio-taped. Although the primary purpose of taping consultations was to provide women participating in the study with an additional information resource, women were also asked if they would be willing to lend their taped consultations to the NBCC towards the end of their treatment. Women who indicated they did not want to lend their tape/s were not excluded from the study.

Response rate

Of the 272 women who were identified by SBNs as eligible to participate, a total of 240 women (88%) consented to take part in the project. The numbers recruited from each Collaborating Centre are shown in Appendix 5. The number of women seen by the SBN but considered ineligible or who declined to participate in the project is shown in Appendix 6. The socio-demographic characteristics of women receiving the SBN model of care are shown in Appendix 7.

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Overview of chapters

Chapter 3: Implementing the SBN model

This chapter describes the preparation undertaken by SBNs and Collaborating Centre project teams for this project. During the implementation of the SBN model, the seven participating SBNs were in regular contact with the project coordinator, in order to discuss and deal with any issues arising. Common experiences are also recorded in this chapter.

Chapter 4: What do SBNs do?

Although the clinical pathway gives guidelines for the intervention provided by SBNs, it is necessary to analyse in detail what the SBNs in this project did on a daily basis. For this reason, SBNs completed a day log detailing their clinical and non-clinical activities during their working day. The logs were completed for one week a month, for six months.

A patient log was also kept for each woman recruited to the project. In this, SBNs recorded demographic details, treatment undertaken, psychological risk factors and details of all their interactions with the patient and family. This chapter examines what SBNs did with women in the project, and what their daily activities were.

Chapter 5: How the treatment team and SBNs view the SBN role

To be successful, the SBN model must be understood and accepted within the multidisciplinary team. This chapter reports the perceptions of treatment team members, allied health professionals, the Breast Cancer Support Service (BCSS) volunteers, and participating SBNs. These perceptions were assessed at the end of the project by means of a semi-structured telephone survey conducted by

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Chapter 6: Women’s perceptions of the SBN role

Women participating in the study were contacted at two and six months after diagnosis to assess their contact with, and satisfaction with the care provided by, the SBN. They completed a self-administered questionnaire and returned it to the NBCC in a reply paid envelope. This chapter reports on this data.

Chapter 7: The impact of the SBN on women’s perceptions of care

The impact of the SBN model on women's perceptions of care was assessed six to twelve months after diagnosis using a previously validated interview schedule, the National Consumer Survey (Williams et al. in review 2000). This was conducted as a telephone interview administered by an external research agency, using a

computer assisted telephone interview system.

Responses of women receiving the SBN intervention were compared to those of women from a nationally representative sample of women with early breast cancer (referred to as the national control). This comparison does not control for

potential differences already existing between the Collaborating Centres and other treatment centres in Australia in terms of other aspects of care (ie other than the breast nurse). Women’s responses were therefore also compared with a sample of women treated for breast cancer at the Collaborating Centres prior to the

introduction of the SBN intervention (referred to as the retrospective control) (Figure 2.2). This allowed the Collaborating Centres to be compared with the national average before the introduction of the SBN model. Furthermore, site differences could be controlled for, by evaluating women’s satisfaction pre and post SBN intervention at the Collaborating Centres.

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Chapter 8: The nature and impact of SBNs’ psychological care

One of the core tasks of the SBN is to assess women’s psychological needs and to adjust their intervention accordingly, in an attempt to reduce levels of

psychological morbidity in women with breast cancer. In particular, SBNs should refer women with significant psychological problems to appropriate health professionals. The impact of the SBN model on the emotional wellbeing of women in this project was assessed at two and six months after diagnosis using the self-administered General Health Questionnaire – 12 (GHQ-12) (Goldberg et al.

1988), which was mailed with the satisfaction questionnaire. This chapter analyses the outcomes of SBNs’ psychological treatment of women in the project.

Chapter 9: Evaluating the economic feasibility of the SBN role

Key factors to be considered when examining the economic feasibility of the SBN role were also investigated in this project. A case study exploring the impact of the SBN on resource use within the multidisciplinary team was conducted in one participating breast clinic, and is reported here.

Chapter 10: Feasibility of the evidence-based SBN model of care

This final chapter examines issues affecting the translation of the SBN model of care into Australian practice. Three key issues are examined: skills needed by SBNs; sustainable caseloads; and the ongoing support needs of SBNs.

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Chapter 3: Implementing the specialist

breast nurse model

This chapter defines the ideal role of a specialist breast nurse (SBN) and describes how the breast nurses were prepared for this position. Transcripts from discussions with the nurses during the six months they implemented the model are analysed. The chapter also examines issues that emerged for the SBNs while they introduced the role, and how the model worked in practice.

Defining the specialist breast nurse role

The evidence-based SBN model provides a structured approach to the provision of clinical and supportive care by way of a clinical pathway (Figure 2.1). The pathway guides SBNs in their assessment and response to women’s needs for information, practical assistance, emotional and psychological support, and promotes awareness of cultural and spiritual beliefs that may affect a woman’s response to breast cancer. To help SBNs implement the clinical pathway, core activities of the SBN role, applicable across all treatment centres, were identified.

Core activities of the specialist breast nurse role

The core activities of the SBN role are to:

• provide supportive care to women diagnosed with breast cancer (early through to advanced); and

• ensure continuity of care for these women (from diagnosis to follow-up after treatment).

Specifically these activities include:

• providing and clarifying information regarding psychosocial, physical, treatment, practical, cultural and communication issues;

• providing clinical information regarding such issues as wound care and complication prevention;

• providing supportive counselling when needed, including family, sexuality and grief issues;

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• ensuring early recognition and referral of women with significant psychological problems to appropriate health care professionals.

Site-dependent peripheral activities

As described in Chapter 2, the Collaborating Centres represent a diverse range of treatment settings and service delivery across Australia. This diversity is reflected to some extent in the extension of the SBN role to meet the needs of particular hospitals. In order to successfully carry out the core activities and meet the specific requirements of their role within the hospital, SBNs engaged in a number of peripheral activities, including:

• clinical procedures in relation to breast cancer patients such as wound dressings, removal of drainage tubes and seroma aspiration;

• involvement in support groups;

• attending multidisciplinary meetings;

• administrative activities;

• educating other health professionals;

• attending educational meetings for career development;

• attending debriefing sessions; and

• participating in committees.

Types of patients

The SBN focuses on providing care to women diagnosed with breast cancer. To a lesser extent, she may see other types of patients, including those:

• at the pre-diagnostic stage;

• with benign disease;

• receiving palliative care for systemic breast cancer;

• with cancer other than in the breast;

• with a family history of breast cancer;

• undergoing other breast surgery; and

• who were previously treated for breast cancer and continue to receive follow-up care.

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Preparing the specialist breast nurse

A number of programs were conducted to ensure that the nurses participating in the project had comparable skills and current knowledge of the treatment and management of breast cancer (Table 3.1).

Implementing the SBN model

On commencement of the project, the SBNs sent introductory letters to, or spoke directly with, treatment team members and other allied health professionals about the project, their role, and how it would be evaluated. Brochures promoting the service provided by the SBN were circulated by some of the nurses, and in-services were given.

Method

Evaluation of the implementation process – including the identification of issues for the SBNs in adhering to the protocol, and the responses of the

multidisciplinary teams to the SBN intervention – was based on observational data extracted from:

• individual teleconferences with each Collaborating Centre prior to commencement of the SBN intervention;

• bi-monthly teleconferences involving all Collaborating Centre team members and the NBCC project team;

• monthly teleconferences involving the NBCC Project coordinator and all SBNs; and

• weekly telephone contact between the NBCC Project coordinator and each SBN.

The Project coordinator reviewed transcripts of, and minutes from, the

teleconferences and telephone conversations in order to identify key issues and concerns raised by SBNs and project team members. Quotes in the following text were extracted from these transcripts.

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Initial responses to the model

Prior to being implemented, the SBN role was discussed with each of the Collaborating Centres’ project team in separate teleconferences. Although the model was generally met with enthusiasm, it was important to work through the clinical pathway with each centre, and determine how the model could best be adapted to meet that centre’s specific needs. For instance, one centre wanted to ensure that the model accommodated women treated at more than one site, as this was a common occurrence.

Table 3.1: Preparing the nurse for the SBN role Event Objective

SBN 2-day workshop • discuss integration of evidence-based guidelines into SBN model of care

• develop strategies for implementing model

• improve supportive counselling skills

• network with other SBNs

• develop a library of National and State resources for women with breast cancer and their families

• familiarise SBNs with research and documentation procedures of project

Communication skills training – two day workshop with medical members of the treatment team

• discuss integration of evidence-based guidelines in the provision of supportive care

• interactive training in effective communication skills

• gain experience in dealing with difficult situations

Periodic literature

review updates • promote awareness of current research and literature on issues relevant to breast nursing

Monthly teleconferences

with Project coordinator • discussion and resolution of issues associated with implementing the SBN model

• supervision and progress update by Project coordinator

• networking and support among SBNs

Regular phone contact

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C h a p t e r 3 : I m p l e m e n t i n g t h e s p e c i a l i s t b r e a s t n u r s e m o d e l Issues emerging during the initial teleconferences with each centre prior to implementing the model included the following:

Issue:

The content of information provided by SBNs, particularly at diagnosis, was an issue for some clinicians (see Chapter 5 for more details). This was more evident when the nurse had been newly appointed and the clinician was unsure of her skills and expertise. A major concern was that the nurse might provide contradictory information to that of the surgeon, or raise issues that the surgeon may not necessarily have wanted raised. Discussing prognostic issues was highlighted as a concern for many centres.

Response:

It was important to discuss the SBN’s role and elaborate clinical pathway details with treatment team members. Ideally, SBNs are in a position to clarify and reinforce information provided by clinicians, to provide additional information tailored to the woman’s needs and to offer support. Discussing prognostic issues (such as when a woman can expect to be told her prognosis) has been found to be an important discussion point for many women during their first SBN consultation (Appendix 1).

Issue:

Another issue was the boundaries of the SBN role and possible overlap with other health professionals and community support organisations (see Chapter 5 for more details).

Response:

To address this, SBNs negotiated the boundaries of their roles with other team members. For the newly appointed SBNs, negotiating their role was assisted by the availability of an explicit role definition and the clinical pathway.

In centres that already had established breast nurse positions in place, it was important to compare the new SBN model and the breast nurse’s prior role, in order to ensure emphasis on the support and counselling aspects of the SBN role.

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Issues encountered by SBNs while implementing the model

Adhering to the clinical pathway

The SBNs experienced some difficulties seeing women face-to-face at the five specified times. As illustrated below, the timing of each consultation was dependent on the existing structural set-up for service delivery at each treatment centre.

Diagnosis:

In the absence of a formal diagnostic clinic, some SBNs reported experiencing problems receiving referrals for newly diagnosed women. For instance, if the patient was seen privately by a surgeon, often the first contact with the SBN would not be until after admission for surgery. In the centres with a diagnostic clinic, the SBN was available to provide support while news of breast cancer was given.

Pre-operatively:

Some SBNs reported difficulties in seeing women pre-operatively. At some centres women attended a pre-admission clinic for their pre-surgical tests and

examinations. They would then be admitted for same-day surgery, leaving a tighter time frame for the SBN to conduct the pre-operative consultation.

Post-operatively:

Most centres offered an early discharge program where women could be

discharged within 48 hours after surgery and followed up by a hospital-based home nursing or community nursing service. This meant that there was a shorter time frame for SBNs to see women prior to discharge, especially if they were discharged on a weekend.

Follow-up 2 (6-10 weeks post-operatively):

The timing of the final consultation could also pose a problem. Some women had already returned to their rural residence, others were back at work and/or busy undergoing radiotherapy or chemotherapy.

If it was logistically difficult to see the woman face-to-face for any scheduled consultation, the SBN would attempt to conduct the consultation by telephone. SBNs reported that this enabled them to continue to support the woman, and that it could be as beneficial as face-to-face contact.

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